I woke up today, well actually now it would be yesterday, and felt about a six on a ten scale. I was able to finish up some writing, and ran a couple of errands. By the time I got home, an hour and a half later, things had just gone down hill. I was having problems with my speech, shaking, and had no leg control. I finally laid down around 4:30 in the afternoon and slept for a couple of hours.
When I got up I went to do some more work on the computer, looked at the calendar, and realized that it was Thursday. I asked my friend if it really was Thursday, and she said yes. I asked her where the preceding couple of days had gone, and she told me that I had spent most of them in bed.
Seems that I only got up long enough to eat, use the bathroom and then went back to bed to sleep for hours. I know the time loss isn’t from medication, because nothing I am on would have that kind of effect. The only thing that I can think is that my nervous system got so over loaded this past weekend doing stuff around the house that it basically shut down for three days.
I can remember (well, actually I can’t remember but I have been told) that back in the day when I drank a lot I would have days where I would not remember what had happened. But that wasn’t the case this time, and hasn’t been for years. It’s rather scary to think that you’ve lost a couple of days of your life and really don’t recall what you did. Something else to tell the neurologist when I get to see her this month.
I am starting to see a pattern to my illness, and I have been taking notes on things, I only hope the doctors shut up long enough to listen. It seems that when I have a day where there is a lot of exertion of any kind, I end up having 3-4 days afterwards of problems. They usually start small: fatigue, soreness, general discomfort the next day. By day two they become more problematic – my legs won’t go where they are supposed to, I have the feeling that I am holding on to live electrical wires and I start to have the speech problems. By day three I am a total wreck, and can barely get out of bed. Day four arrives and things start to settle down. I still have pain and discomfort but not like the previous days.
I don’t know if this will tell them anything, even if it does, the question is will they listen? All too often doctors think they have the answers to all the medical questions, as long as those questions fit into their nice little box. Have something that flops outside that box and they vacillate and try to diminish what you are going through. I really do believe that med schools need to redo their training with new doctors. They need to get them out of the mentality that they are “god” and always right.
Back in a previous professional life I investigated child abuse cases. I spent five years dealing with some of the most horrendous abuses one can’t even imagine. At one point I was invited to speak to a group of residents who were doing their rotation through the ER at a local hospital. During the course of the two plus hours I was with these new doctors I was asked how they were to determine if a child was abused. My answer was simple, you don’t. You determine if there is an injury that makes no sense from the exam and what you are told happened, and if you have any doubts you contact the police and CPS and let people who are trained to investigate abuse investigate.
One young doctor asked me what made me such an expert on determining whether a child was abused or whether it was a simple accident that caused the injury. He also wanted to know what kind of questions he could ask to decide if there was abuse. I’m an expert because I have had the formal training, unlike you doc. I would not think of sticking my hand in someone chest to fix their heart, and you should not be questioning victims and parents other than to get a feel for what might have happened. As I explained to this dolt, I was trained to forensically question both victims and possible perpetrators, he was not. A question asked the wrong way can lead to a case being dismissed or a guilty person going free.
The medical profession has made huge advancements just in my life time. People that once should have died from their injuries go on to live productive lives. And for that I am grateful. But I still think that too many doctors believe their own hype, and look down upon us mere mortals. Too often they don’t listen, and if the healthcare system continues to get inundated with more patients, especially the public healthcare system, doctors will have less and less time to listen.